Health care is increasingly shaped by three values, happiness,
freedom, and fairness. Rehabilitation faces special challenges from each
of these values. The demand for and cost of rehabilitation, the quality
of life for the patient, and the impact on family and caregivers raise
questions about the balance of happiness over suffering achieved.
Patient freedom may be compromised in rehabilitation due to attenuation of informed consent and confidentiality and the possibility of provider
conflicts of interest. Fairness issues are raised by patient selection,
termination of treatment, and the overall inequities in the American
health care system.

There are many important values in health care. But there is a core
value that animates the very purpose of health care: happiness. Doctors,
nurses, and other health care professionals are motivated to preserve
and enhance their patients' happiness, or, to put it in the more
familiar converse, to prevent and alleviate their patients'
suffering.

Since the middle of the nineteen-sixties, another value has moved
into greater prominence in health care contexts. Freedom, often
expressed as the need to defend patient autonomy, has become a prominent
value. Our new legal and moral consensus on informed consent is
expressive of the rise of this value.

In the last several years another value has moved to the center of
ethical concern in health care: fairness. Who gets health care and who
doesn't? Should we develop explicit rationing systems to expand
access and limit health care costs? Is our delivery system fair and how
can it be made more fair?

These three important values, happiness, freedom, and fairness, now
define the main parameters for consideration of ethical issues in health
care. Commitment to the first value obliges us to try to maximize
happiness and minimize suffering in our actions and our policies.
Observance of the second value creates a duty to respect persons'
autonomy and to develop policies that do so systematically. (Dougherty,
1988)

The third value, fairness, is more difficult to define briefly but
a scheme developed by philosopher John Rawls is helpful. A society is
fair, on this account, when its main institutional arrangements would
have been agreed to by all its members under conditions free of bias.
Since bias is our natural condition, Rawls offers a hypothetical model
of a "veil of ignorance" behind which each of us is denied all
substantive self-knowledge-of race, gender, intelligence, religion, and
so forth. Without the knowledge that makes bias possible, we must agree
on institutional structures for a new society we will all enter. In this
condition, each of us would support social arrangements designed to make
the worst possible life the best it can be, because each of us might
have the worst life. Since this is what ideally bias-free people would
agree to, fairness demands that we adopt the strategy of making the
worst life the best it can be when we make choices in the real world.
(Rawls, 1971)

These three central values-happiness, freedom, and fairness-can be
used to examine the ethical dimensions of some important features of
rehabilitation.

Maximize Happiness

Embracing the value of happiness requires that we choose acts and
adopt rules to bring about the greatest good for the greatest number.
This greatest good is typically named happiness by philosophers, but it
must be conceived in the broadest possible human terms. People seek
happiness through physical pleasure, but also, and more frequently,
through the whole range of psychological states of satisfaction and
well-being. Enjoyment of health and of a high quality of life is a
potent source of human happiness.

Seeking to create the greatest happiness by our actions and
policies also involves trying to minimize pain, suffering, and
frustration. Sometimes every alternative involves bringing some
unhappiness about. In these cases, the value of happiness directs us to
choose the path causing the least unhappiness. Often, our choices have
mixed results involving both happiness and unhappiness in varying
degrees for multiple others. In these situations, the right action or
policy is the one with the best ratio of happiness to unhappiness,
counting each person affected by the choice and calculating the degree
of the impact on them.

Much of the work of rehabilitation has this commitment to happiness
at its core. Rarely is curing a patient a reasonable goal. Instead, the
goals of rehabilitative care are maintaining, enhancing, restoring, and
compensating for disabling conditions; promoting the highest possible
quality of life; and integrating the patient into his or her family,
community, and job or vocation. (Haas, 1986; Melvin, 1989) These goals
are particular ways of trying to achieve what the value of happiness
dictates; maximizing patients' physical and psychological
well-being.

But there are challenges to rehabilitation from the perspective of
maximizing happiness. First, successes in emergency and acute
interventions (especially in cases of trauma, stroke, and neonatal care)
have saved many lives that would have been lost just years ago. Now 30
million Americans have some disability or handicapping condition; 10% of
Americans under retirement age claim a disability that impairs the
ability to work. Rehabilitation needs are especially great among the
elderly: 50% of hospital-based rehabilitation is provided to elderly
patients. And their numbers are swelling. From 1970 to 1980 the numbers
of Americans over 75 years old rose from 5.5 million to 10 million,
while the population over 85 years old doubled. It is estimated that
there will be 100,000 Americans aged 100 or more by the year 2000.
(Caplan et al., 1988; Celani, 1987; Melvin, 1988; Steinberg, 1989)

The challenge implied by these numbers can be put simply. Will it
maximize happiness across American society to try to satisfy all of this
projected need for rehabilitation; or could more happiness be produced
by other uses of society's resources and efforts? This is a hard
question, perhaps even a callous question, but it is a question forced
on us if maximizing happiness is an ethical imperative. The point of the
question is sharper still when some of the costs in dollars are
calculated. The average cost of a permanent disabling head or spinal
injury is estimated to be $100,000. There are 50,000 new cases annually,
producing a total cost of $5 billion per year. Total disability care was
estimated to be $6.9 billion in 1987. (Caplan et al., 1988; Celani,
1987)

There are personal costs involved as well. What does it mean to
save a life that would other wise have been lost? Does it mean greater
happiness and less suffering for the patient, or doesn't it often
mean less happiness and greater suffering? Acute care interventions can
often add years to patients' lives, but can rehabilitation, as the
saying goes, "add life to their years"? (Freed, 1984; Maas,
1989)

Such quality of life issues abound in rehabilitation and some of
them turn directly on the calculus of happiness and suffering involved.
Rehabilitation patients are not always grateful nor always capable of
gratitude. They sometimes hate their care-givers for the demands they
impose and for being free of disabilities themselves. Sometimes they
wish for death. (Freed, 1984; Gans, 1983)

There is happiness and suffering created for the families of
rehabilitation patients as well. They are crucial partners in providing
care and motivation. They share the struggles, victories, and defeats.
Families live with feelings of anger, guilt, anxiety, helplessness, even
hatred, directed toward the patient, providers, payers, even themselves.
They frequently sacrifice opportunities for socializing and recreation-
conditions for their own happiness. From the perspective of this value,
care of persons with disabilities at home is a mixed blessing. On the
one hand, for psychological and financial reasons home care is
preferable. Families can make all the difference in whether or not there
is a successful outcome. On the other hand, families are being asked to
bear extraordinary care burdens just as the family as we have known it
is under extraordinary social pressure. And not all patients have
families or have functional families who will care and advocate for
them. (Caplan, et al., 1988; Maddad, 1986; Watson, 1987)

From the rehabilitation professional's point of view, there
are new challenges working with families and with other health care
professionals in a team. Inevitably, there are conflicts of
responsibility and authority to cope with and the added time and costs
of team conferences and communication with all the key providers.
Moreover, providers of care- both health care professionals and
families- face the constant threat of burnout, of "demoralized altruism." In spite of the fact that there are few cures of a
traditional nature in rehabilitation, health care professionals and
families tend to be therapeutic optimists, hoping always that additional
measures can enhance or maintain patient abilities. But then there is
decline and increased disability, the buoyancy of therapeutic optimism
can yield to feelings of powerlessness, apathy, lowered self-image, and
even hatred of the patient. This may mean more suffering and less
happiness for all involved. (Melvin, 1989; Osborn et al., 1988; Gans,
1983)

There is no simple formula for calculating the right balance of
happiness and suffering in so complex an area, but these considerations
raise worries about our ability to maximize happiness in rehabilitation.

Freedom

There are many times when we prefer freedom over happiness, when it
is more important to be able to do something than to feel happy doing
it. A large part of rehabilitation relates not to the value of
happiness, but more directly to the value of freedom. Some of the key
goals of rehabilitation are directly pertinent to freedom; to maintain,
restore, or compensate for patient independence; to allow a patient a
greater range of lifestyle and vocational choices; to enhance patient
autonomy or slow its decline.

There are challenges facing rehabilitation regarding freedom as
well. In the context of rehabilitation, there are frequently problems at
the heart of the new consensus on patient autonomy, problems involving
informed consent. The norm in most acute care contexts now is that any
competent adult has the right to make decisions about his or her care,
even foolish decisions, even life-threatening decisions. Generally a
psychiatrist or court must determine patient incompetence; otherwise
patient competence is assumed. Competent patients have a right of
self-determination, a right to be fully informed about medical choices
at hand and to make personal choices free of coercions. (Dougherty,
1988)

But in rehabilitation, a patient may be asked to sign a consent for
a surgery or medication but not for physical therapy or vocational
counseling. After trauma, or when there is disfigurement, loss of a
limb, or inability to speak a patient may be depressed or in denial about his or her disability. In these cases, families and health care
professionals may feel justified in imposing rehabilitation without
consent or even in the face of a patient refusal. (Caplan et al., 1988)

In such circumstances, the more traditional medical norm of
paternalism has strong appeal. Since the patient is unable to fully
appreciate the benefit offered, like a child, he or she must be coerced
to accept it for his or her own sake. Justification is prospective:
"Someday you'll thank me for this." Perhaps this will be
true, perhaps it won't. Even in the best case, honesty demands an
admission that when informed consent is not respected, patient autonomy,
a freedom so important in other medical contexts, is being overridden by
other values.

Providers may be at legal risk in such situations. A patient who
was legally competent and yet is not offered a choice about
rehabilitation, or whose choice is coerced, may have grounds to sue for
battery. A lawsuit might also arise out of a provider's good faith
judgment to rely on a family member's proxy consent in the case of
presumed patient incompetence if that family member is not designated by
statute or a court to be the proxy decision-maker. In either case, a
patient might successfully refuse to pay for rehabilitation already
received on the grounds that no legally proper consent was given for it.
(Banja, 1986)

Another important aspect of freedom is the ability to control
information about oneself. Information, especially information about
health conditions, can be it powerful means of determining
employability, insurability, and many life opportunities. Therefore, a
right of patient confidentiality has evolved as part of the protection
of patient freedom.

But the nature of team-based and home-delivered care puts special
pressures on the confidentiality of rehabilitation patients. Information
about their conditions, progress, and prognosis must be shared with many
others. This sharing is for the benefit of the patient, of course, but
like the exception to informed consent, this blurring of the focus of
patient rights means that values other than the patient's freedom
are controlling health care choices. (Caplan et al., 1988)

The role of third party payers is important here. Rehabilitation
professionals, especially those in private rehabilitation, must
frequently write reports about a patient's physical, vocational,
and motivational status for insurance companies. Such reports typically
include material provided to the health care professional by the patient
as well as assessments by and conversations with other members of the
rehabilitation team, employers, and family members. Generally the
patient is asked to sign a release allowing these disclosures, but often
the form is a "blanket release" that is overly broad,
confusing to patients, and does not specify by name all the individuals
and entities to whom the information will be released. (Kaiser &
Brown, 1988)

Reflection on the role of third party payers in private
rehabilitation raises a final issue that has an impact on patient
freedom. The overall justification for the unique roles and privileges
of health care professionals is that patients are unable to effect their
own wills in this overwhelmingly complex area. Thus they turn to experts
who, through their professions have committed themselves to fiduciary
agency; that is, to placing the interests of their patients ahead of
their own or anyone else's interests.

But this may not always be the case among some rehabilitation
professionals, especially in the private, for-profit sector. There may
at times be a conflict of interests between patient and insurance
company. Advocacy for the patient can take second place to concern for
cost-effective care from the payer's perspective. In an
increasingly competitive private rehabilitation market, third party
payers may become the clients. Their interests in limiting benefits and
costly services or in speedy returns to work may conflict with the
desires of patients and even with their best medical interests. The
demands of business may take precedence over concerns to deliver optimal
human services. In the worst cases, this may mean serving the interests
of financial organizations instead of persons with disabilities,
effectively abandoning the principle of fiduciary responsibility to the
patient. (Nadolsky, 1979, 1986)

This problem is most obvious in the private sector but public and
nonprofit rehabilitation face similar challenges. As budgets tighten and
demand expands, pressures mount for shifting primary accountability to
financial officers and away from patients. In both cases, confused or
reordered fiduciary responsibilities may have the effect of limiting
patients' freedoms by denying desired or needed rehabilitation
services.

Fairness

The new third value in health care is fairness, the demand that
patients have equitable access to health care services. In
rehabilitation, this need not and probably should not mean equal access
to all with equal needs, but it should mean access to a decent array of
rehabilitation services for all who need them. Fairness, as judged from
the impartial view of persons placed behind a hypothetical veil of
ignorance, demands that everyone who can draw reasonable benefits from
rehabilitation should have a minimally decent amount of services
provided. But contemporary rehabilitation faces a number of problems
related to this conception of fairness.

Many questions can be raised about the fairness of patient
selection. Unlike most other areas of modem health care, rehabilitation
professionals, especially physiatrists, explicitly choose their
patients. Typically a physician in an acute care setting makes a
referral to a physiatrist who screens potential patients. Clinical
factors, especially diagnosis and prognosis, properly play key roles.
But so do a number of nonclinical factors. It is here that fairness
issues arise. (Caplan et al., 1988; Purtilo, 1988)

Nonclinical assessments can include potential for benefit, likely
burden on rehabilitation resources, age of the patient, ability to
learn, geographic and emotional availability of family support, social
situation, vocational background and objectives, probable disposition at
discharge, degree of patient responsibility for the disability, patient
attitude, and potential quality of life. The central problem with all of
these considerations, as important as they may be, is the subjective
character of their appraisal. When an assessment of any sort is lacking
in clear, objective guidelines, there is potential for bias and
therefore for unfairness. With all the best motives, physiatrists may
choose patients they unconsciously favor for reasons that could not
withstand public scrutiny or for no good reasons at all. (Haas, 1989)

Moreover, assessment of a potential patient's ability to pay
based on his or her overall financial situation or insurance status is
also a key factor in most screening. Even patients with health insurance
may find that the coverage they thought was comprehensive is inadequate
to cover the full range of rehabilitation services they could profit
from. This means that those who are among the truly worst off-persons
with disabilities who are also poor and uninsured or underinsured- are
least likely to be selected for rehabilitation. But again, the standard
for fairness outlined above calls for making the worst-off lives the
best they can be.

Rarely are potential rehabilitation patients aware of the factors
that determine a decision to accept or reject them for a rehabilitation
program. Consequently, if they are rejected they will not know why and
will therefore be unable to correct any errors that may have lead to the
negative outcome or to appeal against any injustice in the appraisal.
(Haas, 1989)

In the face of a selection process that is open to bias, a reminder
of some of the obvious facts about this patient population provides a
useful perspective. There are powerful stigmas attached to patients who
lack capacity for cure in a society that prizes health, who cannot
communicate in an information society, who are aged in a youth-oriented
culture, who cannot work in a society that rewards productivity, who are
dependent in a culture that glorifies independence.

There are other persistent stigmas. In spite of considerable
advances in the last several decades, many patients may benefit less
from rehabilitation simply by virtue of being female in a male-dominated
society. Some of the very same stereotypes often applied to persons with
disabilities are frequently applied to women; passive, dependent,
helpless. This puts women with disabilities in an especially difficult
position. Menz, et al., have shown recently that there are gender
inequities in access, services, and benefits of vocational
rehabilitation. Their study showed that men and women who entered
rehabilitation with the same financial situations exited with remarkably
different fortunes; the women making only 67% of the men's earnings
at discharge. Women with disabilities are thus considerably less able to
enjoy economic self-sufficiency as a result of rehabilitation. (Menz et
al., 1989)

There is also reason to be concerned about the growth of the
private, for-profit rehabilitation sector in terms of bias in patient
selection. These agencies have a very good success rate placing their
patients in the working world. But this is partly due to the fact that
they select patients who have less severe disabilities and solid work
records. Publicly supported programs are then left with the more
difficult cases and the necessity of providing a more comprehensive
array of services. (Kaiser & Brown, 1988; Nadolsky, 1979)

Fairness questions surround the termination of rehabilitation
treatment as well. A unique aspect of rehabilitation is that health care
professionals, not the patient or the family, typically initiate the
termination of treatment. The key notion in this decision is the concept
of a "plateau." Typically a patient reaches a plateau when
rehabilitation goals have been met, progress toward goals has stalled,
or when a patient becomes noncompliant. Most of these assessments are
not based on objective criteria and are therefore subject to the same
concerns about bias sketched above. A bad" patient with poor
emotional support may reach a plateau earlier than other patients with
similar disabilities simply because he or she has become frustrating to
work with. Plainly, beyond some level of frustration and noncompliance there is little justification for the continued use of rehabilitation
professionals and resources. The difficulty lies in defining that point
and in applying it uniformly to all patients in similar situations.
(Caplan et al., 1988; Haas, 1986)

A deeper concern here is the influence of patient ability to pay on
the professional decision that a plateau has been reached. Too often
financial constraints related to exhaustion of third party coverage set
the stage for a termination decision. There is clear potential here for
unfaimess-cutting some of the least well-off from promising services for
lack of ability to pay. (Purtilo, 1988)

Finally, the fairness question has application at the systemic
level. American health care is facing both a cost and access crisis.
Americans spend more per capita and more of our GNP on health care than
any nation, while 38 million among us have no health insurance and
millions of others are underinsured. Any solution that addresses both
problems of cost and access will have to face the question of rationing
seriously. How do we limit the introduction and use of expensive medical
technology? How do we prevent wasteful uses of death-prolonging
technology? How do we rein in the proliferation of boutique medicine" and redirect our talents and resources to helping those
most in need? How do we determine what is a decent minimum of health
care for all Americans? Then how do we afford it?

Our recent experience with cost containment measures is not
reassuring. The application of DRGs to Medicare reimbursement has at
once created a boom in DRG-exempt rehabilitation hospitals and also
presented rehabilitation professionals with a population of more acutely
ill patients competing for rehabilitation beds and services. Even though
their patients are sicker than ever before, rehabilitation hospitals are
shortening their own LOS, returning patients who previously would have
been hospitalized to the care of families and home health care agencies.
More patients than ever before, especially elderly patients on Medicare,
are being transferred back to acute care hospital after rehabilitation
admission, suggesting that their original discharge was premature.
(Hickey, 1987; Kane et al., 1987)

The fate of patients sent home has been poorly monitored in
general. Denials of Medicare reimbursement to some home health care
services continues to be a major barrier to effective delivery of care
at home. Though home rehabilitation is often preferable for all
involved, more research on aftercare is needed to insure that home
health care is effective, humane, and fair. (Wilson & Rinke, 1988)

Conclusion

What practical conclusions can be drawn from these reflections?

First, we must come to grips with the ethical dimensions of the
dramatic life-saving power of contemporary health care. This means
admitting in some cases that, judged in terms of the happiness of the
patient involved, life-saving interventions are not always a blessing.
Sometimes they save a life only to extend that person's suffering.
The realities of rehabilitation for such patients need to be conveyed by
rehabilitation professionals to their peers in acute care settings and
to the general public. This is not to advocate euthanasia, nor to
propose a facile quality of life standard. It is simply to admit that
heroic measures often provide a disservice to the patient. This
admission will be increasingly forced on health care providers by the
spread of living wills and other instruments for advanced directives
that are empowering patients to decline such treatments and the
rehabilitation efforts that follow them.

Second, there should be greater frankness in discussing informed
consent in rehabilitation contexts with patients and with their
families. This includes full disclosure of possible conflicts of
interest. At the same time, the inherent limitations of informed consent
in rehabilitation must be aired more thoroughly. Concern for a
patient's own long term freedom may be justification for
abridgement of some of the dimensions of informed consent by family
members and rehabilitation professionals. When the benefits of
rehabilitation are clear and the trauma of a recent disability leads a
patient to decline rehabilitation, ways should be devised to accept the
consent of family members without the need for a declaration of patient
incompetence.

Third, rehabilitation professionals should take the lead in
demanding a more equitable system for delivering rehabilitation. There
should be no financial barriers to a decent level of care for all
Americans. Health care professionals ought not to be placed in the
position of making decisions about basic rehabilitation services on the
grounds of patient ability to pay. And no patient should reach a plateau
because of lack of insurance. Many of these realities are hidden from
the general public, who only discover them in moments of private
tragedy. Rehabilitation professionals can make these issues a part of
the public debate on how to improve our health care delivery system.

Finally, more attention must be given to the central role of value
judgments in rehabilitation both in making clinical decisions and in
formulating policy. Because rehabilitation lacks the biological norms of
cure-oriented health care and is instead committed to a highly
individuated style of health care, values have always played a key role.
Care is directed by commitment to patient happiness or reduction of
suffering. In the last several decades, patient freedom has become a
more central focus. In the future, fairness will be an insistent value.
Rehabilitation professionals must become more sensitive to the roles of
these three fundamental values, more comfortable in speaking about them
explicitly, and more able to use them to make hard choices. This will
give rehabilitation a better chance to enhance patient happiness and
protect their freedom in a system that is fair to all.